Two Years

(cross-posted from On the Cusp of a Real Breakthrough.)

It’s an emotional time for me. I’ve lost track of the number of times I’ve had tears well up in the last 24 hours. The latest was just a few minutes ago, while reading Kimberly’s blog post. She’s become quite a writer, which may be one of the shiniest silver linings in what we’ve been through in the last two years.

Two years ago yesterday, I lay unconscious on a table while highly-trained professionals cut my body open, took it apart, switched some parts around, and then literally screwed and stapled me back together. It’s a hint of defensive patterns of memory that I hadn’t noticed the date until Kimberly brought my attention to it. I went through twelve hours of surgery to remove a cancerous tumor at the base of my tongue, an operation which was successful, and we hope curative, but not without consequences.

I spent much of yesterday going back to read through our chronicle of that time, the blog Paul vs. the Squamous Monster. There were details that I’d already forgotten. (Stress, fear, drugs, pain and depression aren’t good for sharp memory.) Reading that material, I found myself reliving those days, with the attendant moisture around the eyes that Kimberly and I have come to call “being leaky.” By the time I made it from January to June, I stopped reading, and just went for a full-on cry.

One thing I noticed, in reading with the perspective of the time since, was the brilliant bravery of the two people sharing that ordeal. The posts describing the days immediately after the surgery capture a vitality and humor that I’d forgotten. Nowadays, when I think back to the day of my surgery, what I tend to recall is my fear, how despite assurances I strongly suspected I might die on the table. But what comes through to me from reading is all the love and support that got me to that table, the skill of the people who took care of me, and the astonishing strength and resilience of that guy who was making jokes afterward in the ICU, despite the bandages and the tubes and the massive trauma to his body.

Recently, I’ve been so caught up in my swallowing problems, how I can’t eat the way other people do, my struggle with my fluctuating energy levels and various aches and pains. I spend a lot of time feeling frustrated, or disappointed by my body, having an adversarial relationship with it. Yet in reading I was reminded how well it did back then, how it was “rock solid” on the table, and how quickly I started healing, and how well. I remember feeling differently than I do now. One comment I wrote while we still struggling how to successfully tube-feed me stood out: “It’s a pretty smart and durable old body, after all.”

Yes. Yes, it is. And I’ve been giving it too little credit and affection lately.

Re-reading the six month arc also helped me understand another aspect of my life today. I was sensitive to the way the many months of troublesome tube feeding wore away at that remarkable couple who handled the surgery and post-op so well. The speedy healing slowed to a crawl, and swallowing function kept failing to return, and so much attention went into a complex struggle to simply get enough nutrition and medication through a tube. The one way I didn’t exceed expectations in my healing was in swallowing. I must occupy one of the extreme outlier positions on that curve. Instead of six weeks, I had the tube for nine months, and its removal was my favorite Christmas present in 2004. I still have difficulty eating and drinking, and probably always will.

In retrospect, I’m aware how little we understood the way my previous radiation treatments would affect my healing. It hadn’t occurred to me that I might have muscle motility problems in the small esophageal muscles; I didn’t even really understand that they existed. I didn’t realize that, since all that tissue had been irradiated more than 20 years ago, it would still tend not to heal as well, and would tend to be stiff or scar. Having finally regained considerable swallowing function, I feel sad for that optomistic young fellow so eager about his barium tests in the first month or two. If only it had worked the way he’d expected it to.

Part of this tale is what happened when the immediate crisis had passed, the intense outpouring of support and love from friends and family had scaled back down, and we passed into a realm that is beyond what they teach in medical school. We were caught in a limbo space, where things were both back to normal, and yet really, really not. Healed in so many ways, but still horribly impaired and only healing slowly. Beyond the expertise of the surgeons, and without skilled “healers” who could give real answers and guidance. Struggling day after day after day, in pain and fear and disappointment. No wonder we got depressed. No wonder we never quite got back on track, even when I was finally able to start swallowing.

We’ve come a long way since the hardest of those times, but we’re still shaking off their effects. The love and determination of that couple that was leaving little hearts on the ceiling of the hospital room is still here. But we got pretty bogged down, and exhausted, and we haven’t fully regained our forward momentum yet.

We’ve got plans for a good 2006. The possibility of moving to Oakland has helped us take a good look at our lives and what’s important to us. We’re making a commitment to building a happier, more satisfying life. This weekend we talked to a contractor about starting the kitchen remodel we’d had scheduled for Spring 2004. We’ve been through our first class to qualify to adopt. Kimberly will be starting a nice new job soon.

It’s exciting to think about having a life of constructive change. We’ve spent so much of the last two years caught up in a struggle for survival. It really is time for something new. Still, re-reading the story of that time enables me to recall important things I want to bring forward into that life. These memories, even (especially?) the ones that make me ‘leaky’, help me understand who I am.

I know I have a habit of discounting my successes, and dwelling on failures, and being critical of myself. But yesterday, I spent the day engaged in reading a very impressive story, and it made me realize just how much I have to be proud of, even to boast about. That made me cry all by itself. What an amazing ordeal.

A New Chapter

I’ve finally gotten around to setting up a new blog, for me to write about my life beyond the battle with the Squamous Monster. (In fact, I set it up some time ago, but I’ve been really slow about starting to use it, or wanting anyone to know that it exists.)

But you are now officially invited to check it out. It’ll be changing over the next few weeks as I replace the stock furnishings with my own, and tweak the appearance. But you come to read my blog for the content, right? My first serious post went up just now.

For those interested in technical details, this will be my first blog completely free of Blogger. The new digs are on my own contracted server, using the open-source WordPress for blogging software. My other active blog, for political commentary, Ratiocination, is on the same server, but driven using Blogger. For now.

I’ll be leaving this blog here, but inactive. For all the new info, go to the new place.

Arrgh. Pledge Drives!

I am an NPR junkie. This means that, at least twice a year, I have to live through the ordeal of pledge drives. For the first few years I lived in Seattle, I was able to pull the same trick I used to use in the Bay Area: in a city with more than one NPR station, when one goes into pledge drive, listen to the other. Sadly, as in the Bay Area, the Seattle area stations figured out this trick, and their drives now happen during the same week. Which is now.

As a true believer in public radio, I’ve been a loyal contributor for years, and I’ve renewed my membership in both of these stations. (I’m also a member of a third local public station, but it isn’t an NPR affiliate.) Still I know that I have to listen to at least a week of clumsily ad-libbed pleas for people to pledge, and poorly performed demonstrations of various silly giveaway items, and the same special pledge-week versions of shows.

Once again, I find myself wishing public radio could be more like shareware. With shareware, you can download it and use it for free, but you are confronted at startup with a box asking you to pay for it. Sometimes you have to wait before you can click to dismiss this box, but once you do, you can still use it. But, once you’ve paid, you never see that annoying box again. I wish there were technology to allow radio listeners who have already pledged to get regular programming, while all those out there who haven’t chipped in got the pledge drives.

Second best would be if NPR gave classes to local affiliates in how to make the pledge drives entertaining. At least the folks in Seattle are better than the ones at KQED in San Francisco, who seemed never to have heard that “more flies with honey” theory.

Still, as bad as they are, a few weeks of pledge drives spread around in a year is SO much better than the constant, annoying ads on commercial radio.

Another Time Around

Looks like I made it through another trip around the sun. Apparently, if one keeps hanging on stubbornly, this happens. It’s very confusing: just when I’d gotten used to thinking of my age as “45″, I have to learn something new.

I’ve been having serious thoughts about retiring this blog, and starting a new one dedicated to my daily life in a metaphor that doesn’t involve fighting a deadly disease. I’d thought I might actually get it up and running by today, but, well, I guess that ‘gang agley’. (What is the past tense of ‘gang’ anyway? Any Scots out there?)

Celebrations of this oddly amazing yet also mundane occasion have so far been low-key. There is talk of going to see the Wallace and Gromit movie on Friday. I am a wild and crazy guy.

Starting the Kick

Back in my youth, when I ran on the high school cross-country team, I spent a lot of time in each race thinking about “the kick.” Race strategy dictated that one reserve a last bit of energy for the very end of the race, when one would pick up the pace, and pour on speed toward the finish. Some runners had a natural kick, but others like myself struggled throughout the race to judge the cruising pace well enough so that there would be enough left over for a good kick at the end. The trick of the kick was to not start too soon, which might cause you to burn out before the finish, but to start soon enough, and strong enough, to outpace other runners with whom you’d been pacing over the preceding miles. For some, the kick took the form of an all-out sprint when the finish line was in view. For others, it meant gradually picking up the pace across the last mile of the race, taking a psychological toll on the opponent, by seeming to get stronger as they felt tireder.

The idea of a “kick” came to mind this morning, as I was thinking about wanting to finish the year strong, wanting to pick up the pace and productivity in my life. The end of the year makes a good psychological “finish line,” and the three months between now and then is a good amount of time for gradual projects like an exercise routine to have made a difference by then.

There have been many prompts toward these thoughts. In Seattle, the seasons have definitely changed; days are cooler, leaves are changing, dawn comes late. Kimberly had her birthday yesterday, which means mine is days away. For a celebration, we spent the weekend in Portland, where the mirrors on two walls of the bathroom allowed, well, a frank assessment of one’s physical assets. And, perhaps fertilizing the ground, Labor Day weekend saw us at Deep Springs for an alumni reunion, with much opportunity for reflection on potentials old and new.

All of which is throat-clearing by way of considering my desire to close 2005 with a “kick.” Today it is my intention to gradually pick up the engagement, creativity, and productivity in my life, in a variety of ways. The goal is to make some substantive changes for the better, that will continue to pay off in 2006. What those changes are will be the subject of later posts. Among them, obviously, more work on building my physical fitness, for while I was able to walk all over Portland’s Pearl District on Saturday, I’m still feeling it this morning. (But my stiff and aching muscles didn’t stop me from getting packed up and out walking to do errands this morning, and making it to the cafe for a bit of wireless blogging. In true Seattle style, I’m one of 8 laptop users here, vs. 1 guy who’s just reading the physical newspaper.)

Paul Two-Navels No More

On September 7, I was back at UWMC getting cut by Dr. Futran. Amazingly, I actually requested this, and went under my own power.

When they removed my feeding tube back in December, it was a fairly simple process. Essentially, they grabbed the tube and pulled it out. However, since the tube had been in there for months, the skin had grown around it, so that when it got yanked out, I was left with a dimple in my belly. For the last 10 months I’ve had two navels; the one from my umbilical cord, and the one left by my feeding tube.

Happy as I was to be eating again, and no longer dependent on the tube, the extra dimple really annoyed me. I wanted it gone. But I didn’t really want to get cut anymore, and I figured it would change over time, and maybe become less annoying to me. But, by the last time I saw Dr. Futran, it was still there, and still annoying, so I asked him what would be involved in “fixing” it.

He said that it would be a simple procedure to “revise” that, that he could do in the office, and he’d be happy to do it. So we scheduled a longer appointment, and that was Sept. 7.

First, he injected my skin with a local anesthetic, one vial below the dimple, and another above. His technique betrayed that he’d been a dentist before otolaryngology, and had taken the course about tips and tricks for injecting without pain.

Half an hour later, I was lying flat in a reclined procedure chair, sterilized and draped, and he went to work with the scapel. For me the hardest part of the procedure was that lying back that way gave me a dry, ticklish spot in my throat, and I kept coughing. Well, that and the moment during prep when they’d stuck the cold and jelly-fish-like sticky grounding pad for the electro-cautery machine to my side. (Brrr.)

Being conscious for electrocautery was a new addition to my medical experiences. There is a sizzling sound, and there can be smoke and a smell. I suppose others might find it fairly disturbing, but I was amused by the idea that my belly was being arc-welded, like a piece of farm machinery out at the ranch.

Two layers of stitching followed, one deep to take the bulk of the strain, and the other to bind the top of the skin and make it heal smoothly, and I was done. Antiseptic ointment, a bit of gauze, and back in ten days to have the top stitches out. Voila!

By shortly after dinner, the local anesthetic was wearing off. Acetaminophen was able to keep the pain to a mild level, though I did get a scrip for vicodin. I also had a round of antibiotics. That night, I changed the bandage, and looked at the handiwork in the mirror. It seemed like it would heal to a short, curved, and most importantly, flat scar, not even the most dramatic on my torso, much less my whole body.

I’m pretty happy about it.

The stitches came out today. I’m posting three photos, before, with stitches, and with the stitches out. (The scar in the upper right is from surgery I had back in California, to drain fluid that was building up around my heart. In the middle photo, you can just see the long scar on my forearm from my squamous surgery. As I say, the new one is not so dramatic.)


Bug on the Run

Today I started to feel like myself again. There is really something wonderful when you’ve been feeling run down and sick for day after day, tired and achey and foggy-headed, and then it goes away. It’s wonderful

Monday I went to my doctor’s office, where they swabbed me and looked me over. They now have a rapid strep test, which was negative, after which they sent the swabs to be cultured to test for all the stuff that doesn’t show up on the rapid test.

I did get a prescription for Nystatin, to clear up a flare-up of thrush that had bloomed over the weekend and started to hurt my tongue. After a few days, my tongue feels much better. Between that, and reaching the 10 day point after which most bugs have resolved themselves, I am doing pretty well.

Now I just have to catch up on all the stuff that didn’t get done while I was feeling bad.

The Littlest Visitor

When our family from Houston visited us recently, we had a fun time with our two nephews, Max and Reed, nicknamed Boo. While they were here, I would have thought that the smallest of our visitors was the adorable Reed, who is not quite two years old.

Now, however, it appears there may have been another visitor from Houston, one which didn’t get back on a plane at the end of a week. I refer to a malicious microbe, which seems to have found my body a pleasant spot for an extended stay. Monday night I felt like I was running a fever, had a headache and muscle aches. I did not sleep well, and Tuesday I spent most of the day trying to decide which of my overall body aches were related to cycling, and which were signs that I had a bug. Since exercise doesn’t usually leave me with a sharp headache, I knew that was probably a bug. Though so far, I haven’t run more than a low-grade fever, I’ve been wrestling with the bug all week.

But it wasn’t until yesterday that the littlest visitor and its replicated cohort modulated into their latest game, “let’s give Paul a sore throat.” Let me just say at this point that it seems like a design flaw in the universe that, after all I’ve been through, I haven’t somehow gained immunity against bugs like this. And I really don’t want to get into the whole ‘giving a guy who has problems swallowing already a sore throat’ business. (And they want me to believe in Intelligent Design. Ha.)

Not only is this interfering with eating, it interferes with my sleep. I wake myself up coughing, because the whole unconscious-saliva-swallowing-and-breathing thing, which is fairly tricky for me already, gets much more complicated when there is a sore throat and a little post-nasal drip involved. It’s quite unpleasant, and not at all restful.

Which is why, having now had a 1000mg of acetaminophen and a large mug of warm beverage, I’m going to try sleeping some more.

Full Body Cycling

Normally, we think of cycling as a sport that involves lots of leg muscles. But today, after the second of our bicycling adventures, it’s my torso and arms that are stiff and sore.

I think it’s because, the way we do cycling, the actually pedalling seems to be the least of it. We don’t just hop on the bikes and go, we drive somewhere and then hop on the bikes. Which means bending and reaching to put down the rear seat of the car. Then there is carrying the bikes up the half-flight of stairs from the basement to the driveway. There’s bending over to remove the front tire, and then lifting and wrangling the bike into the back of the car. Then the other bike has to get up to the roof rack. At our cycling venue, the bike has to come off the roof, and the other out the back. Then we can start riding.

At least today we put my bike on the roof. (Here’s a tip for using a roof rack: it’s much easier if the bike is light enough for you to actually hold over your head.)

After the ride, of course, all the loading has to happen again, and then it has to be unloaded at home, including carrying the bikes back down to the basement.

Kimberly, for some reason, complains that her calves and situpon are the sore parts. (It appears there are some advantages to being too short to reach the roof rack, or manhandle a bike into the back of the car.) I believe my situpon benefits from the fact that I’m riding the same English leather saddle I’ve had since at least high school, the same one I rode across the country. It’s well-adjusted to my ischial protuberances by now.

After our ride, we went over to the Ballard farmers’ market, where my newly purchased cycling shoes weren’t the only pair. Riding to the market seems like a common practice. We may start doing it ourselves, since the Burke-Gilman trail runs most of the way there. (The Burke-Gilman is a former railroad right-of-way that’s been converted into a 17 mile paved path through Seattle and north along Lake Washington.) Then the driving would only involve getting down and back up Queen Anne Hill. I may be optimistic, but I’m not even approaching the idea of riding up that!

Back on the Bike

I finally rode a bicycle again last night. It’s been a long time; even longer than the time since I last posted here.

Partly, this was a delayed response to watching the Tour de France last month. Partly it was due to my disappointment with myself at not having kept up with my exercise, to the point past where feeling sluggish turned into feeling achey and bad. I’ve realized I’m too old and beaten up to go without exercise; if I don’t work my body, it eventually hurts physically just to sit around.

Another source of inspiration was Kimberly’s discovery that the Lance Armstrong Foundation was organizing a ride in Portland on her birthday at the end of September. That seemed like an exciting goal, especially since they were doing several routes. The shortest, a relatively flat 10 miles, seemed like something anyone could do with a little preparation. Still, I figured I really ought to try riding, just to make sure I wasn’t overestimating. My body’s current capacities are still a mystery to me.

It took several weeks to follow through on this idea. I envisioned riding a lap around Green Lake, a park nearby that has a lovely, flat, paved path around it. One lap is just under 3 miles, so a 10 mile ride is a bit more than 3 laps around Green Lake. I decided my “test” would be one lap.

However, getting to Green Lake involves a car. Which involves a bike rack, which involves digging the pieces of the rack out of the spiderwebs in the back of the garage, and cleaning it all up, and putting the bike carrier component back in place of the kayak carrier components, and getting the whole thing installed on the roof of the car. Just the sort of obstacles that can delay execution of a Plan, no matter how Masterful. Lucky for me, I’d already recently tuned up the bikes themselves, so that all they required was some air in the tires.

This week the weather has been hot for Seattle, into the 90s and high 80s during the day, but lovely in the long evenings. To provide incentive and commitment, I asked Kimberly to go for a ride with me Friday after work. It seemed like it would be perfect weather. (It was.)

I wrestled Kimberly’s bike onto the rack, and stashed mine in the back of the car. When Kimberly got home, off we went. It was really fun. It turns out that riding a bike is like riding a bike: you don’t forget how. It was clear to me that, although it’s been a very long time and much is rusty, this is the same body that has put in thousands of miles on bikes. It’s just going to take some work to get the rust off.

It was very nice to have the ability to make one’s own evening breeze after a hot day. And I passed the test; I was able to ride one lap fine.

This served as a “shake-down” ride. I discovered that Kimberly’s bike is substantially heavier than mine, and really, it would be worth the few moments to fiddle with her brakes so that I can get her front wheel off, if it meant I could put her bike in the back, and mine on the rack on the roof. I also learned that I miss the cycling shoes I got rid of a long time ago, not so much the Italian Duegi racing shoes with the hand-carved stiff wooden insole and the cleats, but the pair of Avocet casual touring shoes, with the low-profile nylon uppers and the stiff, flat sole that would slip into the toe clips easily, and had that sweet little rubber bump just where it would nicely catch the edge of the pedal. (My running shoes are really awkward with my pedals.) I got a hint of how much training looms when we hit the short, very, very slight uphill section of the path, and I could feel my thighs straining. And I was made aware of just how much strength I’ve lost in my shoulders and neck, because holding my head up while leaning over the handlebars quickly got them burning. And boy, do they hurt this morning!

Despite those complaints, and the multiple attempts it took to get Kimberly’s seat adjusted properly, we both had fun. And we’re going to ride again tomorrow. And while our neighborhood is rather hilly, Seattle has many lovely flat places to ride. It may even be possible to chart a mostly level route around our neighborhood, until we’re ready for some hills.

I’ve really got to get some proper shoes, though.